Dear Anti-Vaxxers: Your Decision Puts My Child At Risk.

Dear Anti-Vaxxers,

I know that you have made a decision to not vaccinate your child, based upon information that you feel is valid and important. I’m sure that you agonized over your decision, weighing the pros and cons. I know that you are looking out for the best interest of your child and your family. Perhaps you think it is the natural way to approach parenting. I have a different view, however, and I’d like to share it with you.

I am the mother of a chronically ill child. Twelve years ago she contracted an e-coli infection, which turned into a syndrome that blocked the small blood vessels of her body, depriving them of oxygen, and killing off parts of her organs. It’s called Hemolytic Uremic Syndromes, and it’s one of the reasons that meat and vegetables are recalled when it’s discovered that they have e-coli. It’s not just a few days of diarrhea. It kills young kids when it’s serious.

My daughter was lucky. She survived. But she has many scars, literally and figuratively as a result of 200 days as an inpatient at Massachusetts General Hospital. When she was five years old, just eighteen months after the initial infection, she underwent a kidney transplant because her kidneys were so damaged from the e-coli. The transplant was miraculous in many ways. She went from needing 24 medications around the clock to needing just a handful every day. She went from sky-high blood pressure to now manageable levels. She’s still a diabetic from the infection, that didn’t go away, but like many others in the country, she has a healthy and sensible diet, and she takes insulin. Her load is a heavy one, but she handles it with grace and humor. She is a fighter and an optimist.

She is now a fifteen year old, a freshman in high school, beautiful inside and out. She is a leader on her track team, running her 100 meters in under 13 seconds. She is a striker on her soccer team. She competes in triathlons. She is a referee for youth soccer, and she speaks to doctors at Grand Rounds.

When she is healthy, life is very, very good, and we are very, very grateful.

But my daughter is immune suppressed. Like the thousands of tiny babies who can’t get vaccines yet, or like the thousands of people who are undergoing chemotherapy. For the rest of her life, in order to keep her kidney transplant, she needs to take anti-rejection drugs, which weaken her immune system, making her sicker faster and harder than normal kids. When most kids get a 101 fever, you give them Tylenol. When my daughter gets a 101 fever, it means 72 hours in the hospital, blood work, and preventative IV antibiotics. Every time. Our lives stop and we go to the hospital. We worry that this is the time something goes wrong. Every time.

That’s just for a cold, or the flu, or a urinary tract infection. 72 hours in the hospital, blood work, IV fluids. Every time.

Now let’s talk about measles.

Measles was declared cured in the United States in the year 2000, and now it’s back. It is not just an inconvenient fever and rash, just like e-coli doesn’t just cause diarrhea. For a small percentage of kids, like my daughter, it can be life threatening. It is life threatening.

Let me explain. If my daughter, or a tiny baby, or a person with cancer, gets the Measles, they get sicker faster, and harder, they go to the hospital, they might need a respirator, other unusual parts of their body will get attacked, and they very possibly could die.

My daughter could die from a disease that was declared cured before she was born.

Yesterday, forgive the term, shit got real. I received a message from Massachusetts General Hospital Transplant Center, that said if my daughter came in contact with any one who might be infected with Measles that I was to contact them immediately for hospitalization, for IV immunoglobulin, to prevent the infection from taking hold, or to fight the infection before it got bad.

Because if the Measles have a 90% infection rate for a normal, healthy child, imagine what the rate is for my immune-suppressed child.

So, dear Anti-Vaxxers, your decision to keep your child from getting vaccines has endangered my child. It may kill her. I understand that you were worried, but of what, exactly? The link from vaccines to autism has completely been debunked. Do you feel that it is your right to put the life of your child over the life of my child, or over the life of those too young to get the vaccine, or those struggling with a life threatening illness like cancer?

Please think of vaccines as a community service. You are vaccinating your child to protect the group. You are the strong, protecting the weak. That’s what communities do. That’s was civilized societies do. We protect the weak who cannot protect themselves. I am speaking not just for my daughter, but for all the immune-suppressed people in this country.

You do not know who walks among you, at terrible risk. You don’t know the woman struggling from breast cancer. You don’t know the age of the baby. My daughter has multiple scars on her abdomen, but there would be no reason for you to know that she is immune-suppressed. Yet your decision could kill her.

Please, please, reconsider your stance and vaccinate your child. If your child is sick, please keep them home. If your child has the Measles, please report it to the Health Department. If your child does contract the Measles, I hope it is a mild case.

If my child contracts the Measles, I hope she doesn’t die.

I’m sure that you would wish that for me too, the safety and health of my child. As parents, it’s all we ever want.

Thanks for listening.

 

(Please Note:  This letter is also published in Medium, by me, on this day.)

View at Medium.com

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Living Through E-coli

The last week has seen a massive recall of Romaine lettuce, following a massive recall last year of Romaine lettuce.  Why?  The Romaine is possibly carrying e-coli.

E-coli is a bacteria that is found in the intestines of cows.  When cows poop and leave manure in the fields, and then it rains, you get e-coli in the water system.  When humans ingest the e-coli bacteria (depending on the strain), they can get incredibly sick.  But the newspapers don’t do it justice when they report on it. Newspapers say most people get diarrhea and some get further complications like kidney failure. That doesn’t really tell you what e-coli looks like, or what it does to the family or the patient.  So I’m going to tell you our story.

My daughter is a survivor of E-coli.  Though I do not often tell the whole story, I think it’s important at this moment to share it with you.  It’s not pretty.  In fact, I have said on numerous occasions that I wouldn’t wish this on my worst enemy.

At the age of three, on Father’s Day morning, she woke up and said she had a belly ache.  That belly ache turned into diarrhea and vomiting. The diarrhea turned bloody.  Though she was potty trained she needed to go back into diapers and I needed to change them every fifteen minutes.  She stopped peeing.  She got pale. She screamed in pain for days on end.  I could not comfort her.

When her pediatrician suggested that we get a stool sample, we leaped at the suggestion, and hand delivered it to the hospital.  Within a few hours we were air lifted from our home in Randolph, Vermont, to  Dartmouth Hitchcock Medical Center.  We were told that Wendy had a complication of E-coli called Hemolytic Uremic Syndrome.  We were told that her kidneys had already shut down and that we were being transferred to Massachusetts General Hospital.  We left at daybreak for Boston in an ambulance and our lives were never the same again.

Wendy’s kidneys did not function for over three weeks, the shiga toxin in the E-coli broke down all of her blood cells.  The doctors were afraid something else was wrong but could not do a lumbar puncture (spinal tap) because they were afraid she would bleed out.  Her white blood count was higher than a leukemia patient.  She began to have seizures, her blood pressure would bottom out, and she would be revived with epinephrine.  Though it was not indicated, the doctors decided the only course of action to possibly save Wendy’s life was to give her antibiotics to kill the bacteria, though they knew that by killing the bacteria they would be releasing all the toxin at once.  The doctor gave me a hug and suggested that both of us sleep in Wendy’s room that night, because, well, you know why.

She lived.  Her kidneys stuttered back to working after about 21 days but were permanently damaged.

A few weeks later, they discharged a brave fragile warrior and her parents, but we barely made it home when stomach pain began again.  Her intestines had closed up as a result of the scarring from the HUS.  We were rushed back through three states and she had a primary bowel resection:  the surgeon removed about six inches of large intestine, and she stayed in Massachusetts General Hospital for another month.   We made it back to our house in Vermont in September.

I took a year’s leave of absence from my job, teaching at the vocational school in our town. Instead I became an expert in caring for my child.  Wendy was also now a diabetic (her pancreas works at 15%, again a victim of the e-coli) and she had serious dietary restrictions.  First, the diabetic restrictions and injections, and then the diet of someone with kidney disease:  low magnesium, low sodium, low potassium.  I begged to get a referral to a dietician because I had no idea what to feed my child.  I made lists of things she could eat by meal, 10 possible breakfasts, 10 possible lunches, 10 possible snacks, 10 possible dinners.  I had lists of low potassium foods and high potassium foods.  Of course all of her favorite foods  were high potassium, so I became an expert at measuring and substitution.

A stomach ache again in October, just before Halloween, where Wendy was going to be Fiona from Shrek.  More of her intestine had closed, more to be removed.  This time, the surgery resulted in an infection and sepsis, and Wendy coded in the PICU and had to be revived in the middle of the night.  Attending physicians came flying through the doors as Michael and I sat in the waiting room, one finally sitting down  next to us and said, “What the fuck happened?”

Seven more weeks in the PICU, with Wendy unconscious.  Chest tubes and PIC lines.  More pumps than space on the pole, so there were extra pumps in the bed.  Teams of doctors and nurses  and pharmacists honestly not sure what was going on.  They tested her for AIDS and Cat Scratch fever on the same day.  They were grasping for straws.  We went through Thanksgiving without her conscious.  They only thing she could do was cry.  She started to improve, slowly.  We had Christmas in the hospital. We couldn’t bring her home.  When we asked, the Doctor said if Wendy was going home, she was going with her.  We got two hours to bring her to our apartment in Boston and open up presents.

At New Years we “celebrated” in the hospital and saw the fireworks from the 17th floor of the Ellison building.  The doctors thought they could release her if we stayed locally, so they released her, but she was on so many medications (24 of them, all taken in two hour increments around the clock) that her digestive system couldn’t take them all and they readmitted her before her birthday on January 9th.  She had no candles on her 4th birthday cake because you can’t have open flames in the hospital.

By the end of January they released her again but she went into heart failure and was readmitted.  They floated the idea of a heart transplant, but decided to wait and see. We watched the Superbowl from the PICU.  She also spent Valentine’s Day in the hospital.  New restrictions were placed.  No more than 750 milliliters of liquid a day, I administered it in tablespoon increments.   I had to measure her urine.  I had to weigh her twice a day, take her blood pressure  twice a day, call the doctors to adjust medication almost every day.  They knew my cell phone number by heart.

By this point, we decided that Wendy and I had to move to Boston semi-permanently, that we couldn’t risk her health and the weather.  So we rented an apartment in Charlestown and she went to three different doctors a week.  This was March. She slowly started to get stronger.  I would take her to the park, I would take her to the art museum, the children’s museum, the science museum.  We walked miles in the city.  She took five medications just for her blood pressure.  She took two medications before she ate any meal.  She had insulin shots once before bed and with everything she ate.  I was a mobile medical lab in my purse.  But she got stronger. She improved.  She grew back muscle and hair that she had lost during her illness.

By Mother’s Day they told me she was going to need a kidney transplant, and we went through the testing process.  No one in the family could be a match.  A few friends tried but had their own health problems.  We needed to wait for a deceased donor.  She was listed in October and transplanted on the last day of January, 2009.  She had just turned five.  I wondered if it was going to be her last birthday.

After the kidney transplant she continued to improve.  She went up up up.  The doctors peeled away her medications. She went from 24 down to her current 5 medications that she takes every day. She still is a diabetic.  She still needs to watch what she eats and how much she drinks, but she appears to be a healthy, active, athletic, child.  We are so proud of her.  And we have met a veritable army of amazing people: doctors, nurses, child life specialists, music therapists, phlebotomists, etc.  I am grateful with every cell in my body for their hard work and dedication.  We leaned on the strength of friends and family, of other e-coli survivors, and met other amazing organ donors and transplant recipients.  And I learned a lot about myself, my husband and our marriage, that we can survive anything, even our daughter almost dying multiple times.

But to be clear, all of this happened, ALL OF IT, because of an e-coli infection.

Now you know why I wouldn’t wish this on my worst enemy.

We do not know how Wendy contracted her e-coli.  It could have been the hamburger she ate at my end-of-the-school-year picnic. It could have been swimming in the river.  It could have been eating bagged carrots.  We determined for our own sanity that we were glad we didn’t know the source of the infection because one or both of us would feel never-ending guilt if it was the hamburger, the carrots, or the river.

Here’s the thing:  e-coli infections used to be rare, but they are becoming more and more common.  And there’s a straight line reason to the problem:  growers aren’t required to test the water they use to irrigate their food crops for pathogens like e-coli.  So if no one is testing for them, the only way we find out the pathogens are there is because people get sick, and sometimes they die.  The Obama Administration constructed rules for the FDA to begin implementation to mandate water testing, but the new administration has tabled the testing mandate for four years.  And people keep getting sick.

Farmers contend that testing water is too expensive.  Well,so are medical bills.  So is chronic illness.  So is never getting your life back the way it was.

So what to do?  Doctors have told me that if Wendy gets e-coli again that she won’t survive it.   I have been considering growing my own lettuce at home, easier in a Massachusetts summer than the winter.  I’m looking at greenhouses and hydroponics, grow lights and aero growbeds.

But I’m also going to be contacting the FDA to get these water testing regulations sooner rather than later.  If I can keep one other person from living through the hell that we’ve lived through, then it’s worth it.  If I need to tell Wendy’s story over and over again, I will.

This is too important to sit this out and wait for the regulations to go into effect in 2026.  How many people will suffer and die before then, on something that can be easily fixed and seems like a no brainer?

If you’d like to read more about it, here is an article published before the latest outbreak called The Science is Clear: Dirty Water is Making Us Sick.

If you’d like to talk to me, leave me a message.

 

 

 

 

We Brought Our Kids to the Vigil

By now you know about the terrible tragedy in Pittsburgh.  Eleven faithful Jews gunned down by a madman, fueled by rage and social media.  You know that it was the gathering time for a Bris, a naming ceremony for a baby boy, just eight days old.  A celebratory time, a time to welcome that baby into the congregation.

It was an unspeakable tragedy in America.  A collective gasp was heard across the nation, but in my town especially. I live in a small New England town with multiple synagogues, christian churches, and even a mosque. We have an active interfaith community.  To see the news unfold and to see the antisemitism in America grow and go unchecked is terrifying.

I contacted a rabbi in town and asked if there was going to be a vigil and she sent me the information.  It was to be held at the largest synagogue in town on Sunday evening. As I sat down for lunch with my family, before going to Wendy’s soccer game, I told them that we were going to the vigil to support the Jewish community during this time of mourning and fear.  I explained what happened in Pittsburgh and said that it was important for us to go.

The kids didn’t really want to go.  But I pressed the issue, along with Michael.  We said they didn’t have much of a choice.  We are not Jewish. And We were going.

Vigils are uncomfortable.  Looking at death is uncomfortable.  But it’s important for the community, especially the gentiles, to go and show support.  Stand up, show up, and shut up.  Our job is just to show them they are not alone.

As we walked to the synagogue that evening, I held Penny’s hand and told her that if she had any questions during the service, that she should ask them and I would do my best to answer, but to make sure she asked in a whisper because people will be lost in their own thoughts.  We thanked the police officers who were guarding the door for being there.

The synagogue  held hundreds of people and it was standing room only.  We ended up snagging four chairs in two different rows:  Penny and me together, Wendy and Michael ahead of us.  The rabbi of the congregation where we were meeting thanked everyone for coming, stating that just by coming we showed that we were not afraid to be in a synagogue after the violence.

Then the words of comfort from different rabbis of all the congregations in town. There were a few songs that they sung in Hebrew first and then allowed us to join later in English.  One rabbi asked us to be silent for a minute and a half.  Another asked us to introduce ourselves to the person next to us and looking around I saw lots of friends and neighbors, both Jewish and non-Jewish.  After the rabbis, a catholic priest spoke, words of healing and solidarity.  Then the imam from the mosque in town spoke with words of comfort.  At the end, all of the religious leaders stood together on the bema and spoke the names of those who died, and then we all rose and together sang “God Bless America.”

At the conclusion, there were lots of hugs.  The woman in front of me, who was sitting next to Wendy told me how lovely she was.  Penny spotted a friend and ran up to her to say hello.  But overall there were very few children, which was a shame.  There is a fine line between scaring children senselessly and showing them ugliness in the world in a way that has meaning.  Michael and I felt the girls were old enough.

And when I asked Wendy this morning in the car, what she thought, she said, “I think it was good.  It was good we went.  And I think it was important to sit in the temple to think about what happened and to show our support.”  And I realized that it really was the right thing to do, Wendy got it.  She understood the importance.

I felt like our little town got it right last night. I was glad to lend support to resilience, and I was glad my kids were there.  In a few weeks there will be an interfaith Thanksgiving at the same synagogue, and I hope to go with my girls, this time for a celebration instead of a great sadness.

It’s good to show my girls that communities come together in good times and bad times, but especially in bad times.  We all have trying times, but it is community that pulls us through. We stand together and lean on each other.

It’s what communities do.

Storms Make Trees Take Deeper Roots

Fitting into the working world as a mom of a chronically ill kid can be challenging.  I have found that for the most part, part-time work has been the best fit.  It’s flexible, it’s convenient, and it allows me to still take Wendy to doctor’s appointments, or call insurance companies, or figure out prescriptions and durable medical devices, or whatever.  Being the mom of a chronically ill kid can be a lot of work.

But I still want to be a professional, and I have trained to be a historian, or a teacher of history.  For the past ten years I have worked part time as a history adjunct in both Vermont and Massachusetts.  Recently, the college where I worked shuttered its doors.  It was devastating to all involved:  students, professors, and administrators.  We had all been cut adrift with not so much warning; we were told in April that the college would close in May.

So I needed to take stock of what I had done for the past ten years.  I had cared for my very ill child, I had advocated for her in a hospital setting. I had monitored and adjusted her 24 different medications, her three different insurances, and her doctors in three different states.  I had spoken at Grand Rounds, had spoken to medical students and new residents.  I had helped to revise documents released to the public about medical conditions.  I had created a welcome video for children when they arrived in the Emergency Department, sick and scared.  I had lobbied politicians and representatives for medical insurance rights.

Here’s the thing:  no one cared.  No one in the medical world would give me a job based on these qualifications.  They thanked me for my service and after the initial interview I never heard from them again.

I also applied to many different part-time teaching jobs.  I had lots of experience, I’ve taught lots of different subjects, from world history to American history, to Native American, African American and women in American history.  I’ve taught courses on totalitarianism and brought students to concentration camps.  But when I was asked why I worked part-time, my response of taking care of my daughter while working was seen as a liability.  They thanked me for my services and after the initial interview I never heard from them again.

Let’s be clear:  I’ve worked hard for the last ten years.  I’ve had to do things to and with my child that I would not wish on my worst enemies.  I have been brought to the edge of sanity with grief and worry and sleep deprivation.  But as I suspected long ago, the rest of the world does not value that kind of commitment, or organization, or dedication to taking care of my child.  Most people see me as a liability, though I’ve never missed work, I’ve always managed.

I’m an excellent teacher.  I’m an excellent caregiver.  I can be both.  I have been both.

This time has really damaged my self-esteem, because even though being a parent of a chronically ill kid is hard, to be honest, I really thought I had my shit together.  The college closing was like a slap in the face,  the world I had created was shattered like a false mirror, revealing what the rest of the world really knew, really thought of parents of chronically ill kids.

I wondered if keeping this blog, after my experiences this spring and summer, was just an exercise in vanity.  Maybe, I thought, I should stop writing.  But I realized other people, other parents, must feel the way that I do, working the hardest job in the world, and feeling undervalued by society.  So I’ll keep writing, at least for now, or until no one reads the blog posts anymore.

As a postscript, I have found a job, and I really love it.  The problem is that it’s full time, and I’ve been struggling mightily with the other aspects of care.  My chronically ill daughter and her doctors’ appointments and insurances.  My other daughter who is well but seeing less of her mom.  My husband who is valiantly picking up my slack in those departments and whom I couldn’t do any of this without.  I’m sure that these will be other blog posts in the future.

Moms and Dads of chronically ill kids, know that I value you and I know how hard you are working.  I know from experience.  The world may not value the struggle but other parents recognize the hard work it takes to resemble normal.

Keep going.  Storms make trees take deeper roots.

Happy Father’s Day to all the Kickass Dads Out there.

Father’s Day is a hard day for my husband, because it was on Father’s Day 2007 that Wendy first announced she had a stomach ache.  That stomach ache turned into a life threatening bacterial infection, that turned into cascading organ failure, sepsis, and an eventual kidney transplant, abdominal surgeries, and a variety of secondary diagnoses.

I can understand why he doesn’t like the holiday. But I wish he would get over it because he’s a kickass dad and we need to celebrate that.

When Wendy was in the hospital, over 200 nights as an inpatient, he spent almost every single night with her.  They had their own routine: They would walk me down to the entryway, come back, set up the beds, brush teeth, get in pajamas, and then read Harry Potter.  While in the hospital they read almost the entire series.  After hours they would sometimes go for walk in the hospital, to the PICU to see the fish tank, or to look in the gift shop window.  When I arrived in the morning with coffee, we would both stay to listen to rounds and then he would head back to our hotel room to take a nap, because honestly how much sleep did he honestly get on a tiny bed in a hospital room?

When Wendy was released, and the family still had to live in Boston to be close to the hospital, my husband looked for an apartment that we could afford and where I would be comfortable being there alone with her.  He found one that not only fit those requirements, but also allowed for a free shuttle back and forth to the hospital. Then he went back to work in Vermont, working three twelve hour days at work, and driving down to Boston for the long weekend, and to relieve me a little bit of the child care.  When he was offered a new job, even though he was worried that he couldn’t commit to it entirely because of Wendy’s health and said so, his boss said, “So you’ll be at 80 percent the first year, and you’ll make it up in the  coming years, I can live with that.”  And so, Michael took a new job as we waited for a new kidney.

When I found out I was pregnant with our second child, also while waiting for the new kidney, I was terrified of telling my husband, because I was scared that it was the one thing that would put him over the edge.  But he was so excited, so happy, that I couldn’t be that worried.  Ok, I was still worried.  New job, new kidney, new baby, in that order.

Now we’re in the present, with two girls who are relatively healthy and stable, and he goes to every sporting event, every recital, every activity.  He arranges the family schedule and sends me and Wendy our invites.  He is his happiest when he is watching his girls perform, especially sporting events, but also for music recitals and art shows.  Everything else comes second to those things.

I am lucky to have a kind and caring partner, who loves being a dad as much as this man does.  Our road has been bumpy with health problems and moves and changes of jobs, but he remains constant.  And so, I really really want to celebrate him on Father’s Day, even if he doesn’t want to be reminded of it, because it’s what started all the trouble, but in its own way, it also started all the grace and greatness of this man.

Happy Father’s Day to all the kickass dads, especially those who are fathers of chronically ill kids, or those who carry an extra burden as a single dad. The world doesn’t give you enough credit, but I certainly do.

The Heroes We Need

I don’t know what I thought motherhood was going to be like so many years ago, but whatever I thought it was, I was wrong.

I recently ran across this quote from Joan Ryan, author of the book, The Water Giver:

“Motherhood is about raising and celebrating the child you have, not the child you thought you would have.  It’s about understanding that he is exactly the person he is supposed to be.  And that, if you’re lucky, he might just be the teacher who turns you into the person you are supposed to be.”

Of course this reminded me of the quote from Batman, our kids aren’t the heroes we deserve but  the heroes we need.

A few weeks ago, I was fortunate enough to hear the remarkable story of Ario Nour and his family.  Ario had a brain tumor and had to go through a therapy that requires you to remain perfectly still with a mask on your face as you are put on a medical bed in a room, alone, while you have targeted radiation therapy.  It’s called proton beam therapy, and it’s necessary for little kids, to zap the tumor but save the precious brain tissue surrounding it.  As you can imagine, this can be terrifying and many children need anesthesia to undergo this treatment.  The problem is, this isn’t a one time treatment, it’s five days a week for many weeks.  That’s a lot of anesthesia.

Ario, at the age of seven, was very clear when he began his treatment:  he didn’t want anesthesia every day, he would find a way to stay still all by himself.  And he did.  The nurses and social workers were so impressed with him that they had an idea:  Maybe Ario could teach other kids to lay still too.  He tried mentoring another child. It worked.

And this peer mentoring program was born. Kids with brain tumors teaching kids with brain tumors what to expect, what to do, how to lay still.  To practice at home, before the treatment, kids try lying on the couch for increased amounts of time, often with something over their faces, like a washcloth or a spaghetti strainer.  They are allowed to listen to music, books on tape, or something else that will keep them occupied.

Then they get their mask specially made to form fit their face. They get to decorate it, and they use it every time they get treatment.

Other kids, after going through treatment and surviving, went on to mentor other kids.  They are proud to be the experts at something, and to show newbies who are sick and scared that they’ve done it and succeeded. That it was possible.

And the program grew.  It wasn’t just one kid helping one kid. It was a program.  Ario had started a peer mentoring program.

I got to hear him talk at the Family Centered Rounds at Massachusetts General Hospital for Children. Ario has had to go back three times for more treatments.  (Read:  He’s had more than one brain tumor.)  Now he’s in high school, and he’s a normal kid.  Smart, shy, humble.

His parents spoke too.  Not only do they support Ario’s efforts for the peer-to-peer program, but they also support and ride with him for TEAM ARIO, where they ride their bikes 50 miles in the Granite State Quest and raise money to fight pediatric cancer.  Ario and his family have raised over $300,000 and Ario has been honored as one of “The One Hundred.”  It’s a dinner that honors one hundred people at Massachusetts General Hospital who have worked hard to fight cancer.

As I listened to this story, truly an inspirational story, it’s important to remember, Ario isn’t cured. He has recurring cancer.  And his parents have this burden to carry, something no parent ever wants to deal with.  And yet, here they are, parents of a child who started a peer-to-peer program, who’s raised hundreds of thousands of dollars, and yet, who is still chronically ill.

He’s not the hero they deserve, but he may be the hero they need.

Of course, Ario is a dramatic example, but think about your kids and what they have taught you. Have they taught you patience?  Selflessness?  Sharing? Have they taught you how to communicate better or how to fight more fairly?  Mine have.

I’m including the video of Ario here, for you to watch. Grab your tissues.

And take a moment to think about how your kids have changed you for the better.

Holiday Landmines for Kids with Dietary Needs

Happy Springtime!  Well, it doesn’t feel like springtime quite yet for much of the country, but the calendar tells us that the Spring Equinox has already  happened and Passover and Easter are just around the corner.

This can strike fear in the hearts of a lot of parents, especially parents of kids who have allergies or other dietary restrictions.  The reason is because a lot of spring holidays have ritual foods that go along with them, foods that are supposed to be used to celebrate the holiday, either through religious decree or family tradition.

A good friend of mine found out that her daughter has egg allergies. How do you celebrate Passover without eggs?  Its one of the parts of the traditional plate, and it’s the key ingredient for many traditional dishes like Matzoh Brei and Kugel.  It was just inconceivable that they would have to go without eggs during the eight day holiday, where they can’t eat any leavening either. They decided to continue using eggs, but to minimize the use.

There’s no doubt, sometimes you need to get creative if you have a child with dietary restrictions, and this creativity can be seen as assertiveness, not always in a positive way.  Traditions are hard to break.

This might lead to a few family misunderstandings, so thoughtful communication and patience is necessary.  One friend told me of her child’s tree nut allergy and how a lot of Passover recipes have tree nuts in them, so they need to be careful not only looking at the labels, but also informing friends and loved ones to be diligent in their preparations for Passover.  She also finds that she needs to ask on the day of the family gathering to make sure all the rules were followed.  Not everyone loves to be reminded.  Sometimes that means your mother in law might tell you how much better the dish *would have been* if the nuts had been added.  Another friend has a child with celiac disease, so they don’t have Matzoh with wheat in it, and if someone brings Matzoh with wheat, they need to eat it outside.

When it comes to Easter, if your child has allergies, you have to get creative with holiday traditions as well.   A lot of the times that means making new ones with ties to the past.  One friend in Vermont told the story of how she has tried to recreate her mom’s cinnamon rolls using her dietary restrictions.  One friend told of how they make their own food and their own traditions around allergies.  One family only has easter egg hunts at their house because they need to know that peanut free chocolate never touched the inside of a plastic egg.

Here’s a great resource for kids with allergies and Easter Products they might enjoy.

For parents of diabetic kids, you realize quickly after diagnosis, that every holiday revolves around food, and that since all food has a certain number of carbs, you need to keep track. This leads to some awkward encounters…who really wants to count the number of jelly beans for one serving?  Did the child eat one ounce of the chocolate bunny’s head or one-and-a-half ounces?  Do you weigh the bunny before and after?

Suffice to say, the holidays can be stressful. But it’s important to take a moment and be grateful for the things you have:  children who are happy, family who loves you , food to eat, a warm house, and laughter.  The rest are hurdles to be jumped, and stress that comes along with it can be managed. Just remember, parents of Brave Fragile Warriors, you’re brave too.

Whatever spring holiday you celebrate, I wish you the best of health and  happiness!

Students, About that Walkout: Totally Do It.

Hi Students,

Thanks for taking the time to read this.  I wanted to take a minute to talk to you about the walkout scheduled for March 14th (or April 20th, depending on where you are in the country.)  I am a history teacher and mom of two girls and I’m one of many adults that will tell you to totally do it.

The walk out has to do with protesting gun violence in schools.  It’s completely fitting that you, the students, would want to do this.  After all, you’re the ones who go to school every day, the ones who have to deal with this fear, the ones who have to go through the drills and the what ifs.  What if an armed intruder comes into the school. What do you call it?  An active shooter? A code red?  Whatever you call it, or your school calls it, it’s totally wrong that it’s something you have to worry about.  You should be worrying about what college you want to go to, who you want to go to the school dance with, whether or not you want to try out for the school play.  You should not have to worry about whether or not there’s a student with a gun who’s going to shoot you in school.

This is your chance to use your bodies in a political movement. The truth of the matter is that money moves politics, and the lobbyists have all the money.   There aren’t a lot of political options open to non-voters, but one of them is peaceful protest.  It’s a protection in the First Amendment, along with freedom of speech, freedom of the press, and freedom of religion.  Freedom to peaceably assemble is right there too.  It’s your right,all of our rights as American Citizens.  Thomas Jefferson called them “unalienable rights” along with Life, Liberty, and the Pursuit of Happiness.   I’d say that not getting killed by a gun in school qualifies toward Life, Liberty, and the Pursuit of Happiness, wouldn’t you?

There are a bunch of letters out there from other teachers who are encouraging you to have a Walk Up rather than a Walk Out.  The idea is that rather than using your bodies to politically protest, you use your bodies to sit down next to the lonely kid next to you, you share a sandwich, you be a nice kid.  And I want to tell you, that’s great, but you can totally do that 179 other days of the year.  In fact, sit down the day before the walk out next to the lonely kid, share your sandwich, and invite them to the Walk Out with you.

Because here’s the thing.  This is ONE DAY.  The walk out is a movement.  It’s a way to organize.  It’s a way to be powerful both individually and part of a group.  It’s being educated about a subject, and making a decision to do something about it, at the same time as everyone else.  It’s a national movement of all teenagers who have said, “Enough.  Enough of being afraid.  Enough of choosing the right of gun owners over the lives of kids.”  And doing it all together, all at the same time, gives it more power.  So Walk Out Proudly.

You might be getting pressure by principals and teachers to not participate in the Walk Out.  They might be threatening you with disciplinary action, detention or suspension, or whatever.  Keep in mind, these are the same people who celebrate people who hid Jews during the Holocaust, who teach you about Martin Luther King, and sitting at lunch counters in Woolworth, or about suffragettes marching for Women’s right to vote.  Here’s the thing.  All of those people whom  you read about and celebrate, they were acting against the law because it was the right thing to do.  It’s called Civil Disobedience.  Why are your principals and teachers against this idea of  your civil disobedience, but celebrate the civil disobedience of historical figures?  Well, let’s just say that democracy is messy and complicated, and it’s hard for your principal and other school leaders to see the light at the end of the tunnel. Their job is to protect you and to make sure that there is order and discipline.  They’re seeing the potential risks to having a bunch of kids walk out, not the potential greatness.

So here’s what you do.  You educate yourself on why you are walking out.  You organize with your friends.  You stay respectful to the adults in your life, while staying true to yourself.  Remember, this is only 17 minutes, from 10 am to 10:17 am, after that you go back in the school and go back to work taking notes and raising your hand, eating in the cafeteria and running track.

Here’s the other thing you do.  You bring your phone.  You take lots of pictures and videos.  And you post them on all of your social media accounts.  You make this go around the world again and again and again.  You show your power as soon-to-be-voters and internet savvy consumers.

And then you do one other thing.  You write to your Members of Congress.  You write to the President.  Maybe you even send them a picture.  You say that you’re a student who Walked Out and you tell them why you walked out.  And you tell them that you’re not going away.  And that they will be voted out if they don’t change the gun laws to protect kids in schools.  Governing is just a plan for the future. If you don’t like the way your representatives are running the government, you can vote them out in favor of someone that has a better plan .  You have the power, or you will very soon.

One more thing.  I want to tell you how proud I am that you’re taking a stand and making yourself visible.  You are going to be the leaders of the world, and I’m glad to see that you’re doing it with thought and responsibility.  That’s what this country needs more of, young people who speak truth to power.  Speak your truth.

Please share this with your friends, and let me know how it goes.  I can’t wait to watch this unfold. You are Brave Fragile Warriors. Be safe and have fun.

 

 

Family Centered Care is a Partnership

When you take your child to the doctor, or to the hospital, how much do you know about them?  How much do you influence them?  How much influence do you have over the nurses and the front desk staff, the phlebotomist or the technician?  Have you helped create the design of the location, or the layout of the room?  Have you influenced the way the providers interact with you?

How much influence do you want to have?

When Wendy was first sick, many years ago, we had no experience with doctors or hospitals.  We walked into a brand new situation, filled with well meaning and empathetic providers and a brand new Pediatric Intensive Care Unit.  But the unit was so new that no one knew where anything was, and I remember watching doctors rifle through drawers when Wendy was having a hard time breathing in order to get the right equipment to intubate her (put a breathing tube down her throat.)  I remember when she was breathing on her own again and a resident came in with a weird breathing apparatus that they wanted us to use so that Wendy’s lungs could get stronger, and then after the resident leaving, the nurse whispering that she would get us a bottle of bubbles instead.

I remember in this brand new PICU facility having the problem that Wendy wanted to pee on her own (at the age of 3) and there not being a toilet for her.  And I remember in this nice new facility that the television where we were watching the football game caught on fire.

All of these things were totally normal, understandable, but also preventable things. (Well, maybe not the Television Fire.) If a parent had been around to help with the planning of the spaces, to talk with the residents, to be a part of the process, then maybe some of these snafus wouldn’t have happened.

This is the idea behind family centered care.  The idea that as doctors, and nurses and other staffers, you’re not just treating the illness, you’re treating the person.  And with the case of little kids, you’re not just treating the person, you’re treating the entire family.  Lots of changes have been made since the day we walked into Massachusetts General Hospital almost eleven years ago.  Since our first day, the hospital has instituted bedside rounding, where the doctors go into the room to talk to the patient and the families to make a plan for the day, to see if the family has any questions, and to make things as clear as possible.  The nurses call once you’re discharged to see if you have any additional questions, or might have forgotten something, and to help you set up follow up appointments with your providers.  And you have the opportunity to rate your hospital stay, to mention what has worked and what hasn’t worked.

These are great improvements, real changes to the quality of care and the way parents and patients feel a part of the team.  These have been life changing improvements.

But whet if we could do more?

What if family centered care included the systemic planning of the care to begin with? What if families were asked to meet with providers before care ever took place to make the care itself better, seamless care?

I’ve been working toward this goal for a long time, as a member of the Family Advisory Council at Massachusetts General Hospital for Children.  First, I should tell you about the Family Advisory Council.  The FAC is made up of parents, doctors, nurses, social workers, child life specialists, and administrators.  Its goal is to foster better communication between patients, parents and families, and to make the hospital experience better all around.

One of the things that we do is work on projects that we feel are important, like a pediatric wheelchair pilot program.  The hospital didn’t have pediatric wheel chairs, can you believe it? So a group of concerned parents got together with administrators, went through all of the wheelchairs out there, and with the help of an occupational and physical therapist, chose the best one that would serve the needs of the most kids.  The hospital ordered a bunch and the results have been overwhelmingly positive.

Here are some other things that the Family Advisory Council does:

  •  Meet with new residents the very first day of their residency and talk to them about what it’s like to be parents of chronically ill kids and the importance of communication.
  • Meet with fellows who have been through residency and are now seeing patients in clinic and let them ask us questions about challenging interactions with patients and parents.
  • Host an annual Grand Rounds that usually surrounds communication between patients, parents, and providers.
  • Review public health documents before they go out to the public, to make sure that they make sense, that they have  met their goal of communication.
  • Review plans for new spaces to see if there’s anything that might have been missed (more electrical outlets or hooks for coats for example.)
  • Facilitate workshops on the difference between being “courteous” and “helpful” for front desk staff, because it’s possible to be very polite but not the least bit helpful at all.
  • Interview key new staff members who will interact with families, like nurse managers, etc.
  • Sit on standing committees in the hospital including Ethics, Quality & Safety, Inpatient Satisfaction, etc.

The idea is that if parents are a part of multiple systemic areas of the hospital, that the whole experience, for every patient and family, is better, because parents have been a part of the process.

This has been an evolution, each step was challenging.  Just a few years ago I asked if I could be a part of interviewing for a new position and was resoundingly told no.  Change has also been over a long period of time.  I’ve been the parent of a chronically ill child for eleven years, and all of this work is voluntary, and I have a job on top of that.  Other parents on the FAC have similar stories.  You have to have the will and the drive to make the hospital a better place and you have to find champions within the hospital who are willing to see the change as innovation.  Sometimes, that means being abrasive or sitting through discomfort.  A lot of change relies on trust, and trust needs to be built both on the personal level and on the institutional level.  It’s a partnership.

I’ve put this list here not because I want to trumpet our horn, but because these are concrete examples on how your hospital can move forward toward more patient and family centered care. I learned of a lot of this though an organization called The Institute for Patient and Family Centered Care. They are a non-profit organization that helps hospitals really self-evaluate where they are on the care spectrum and how they can move forward.  They’re having an international conference this summer in Baltimore Maryland.  I’ll be there.  If you come, please come by the poster session and say hi.

In a world where health care is already scary, its really great to minimize problems.  Having patients and parents be a part of the planning for systemic care can help to minimize those problems, but because this hasn’t often been done in the past, it’s often met with resistance.   Work through the resistance.  Sit with the discomfort.  Move forward together with trust.  Become a partnership.

 

 

 

We Cannot Stay Silent

I’m the mother of two daughters, one of whom is chronically ill. I’m also a historian, and I teach classes at a small college in the Boston area.  This semester I’m teaching a course on Women in American History, where I have twenty-five women as students.

Well, I had twenty-five last week, this week I have twenty-four.

One of my students was killed last weekend by her boyfriend.

She was stabbed over twenty times in her torso, more than half of those in the back.  Her boyfriend had suffered from some sort of psychotic break, had checked himself out of the mental health facility where he was being treated, and less than 48 hours later stabbed my student to death.

It is still fairly early in the semester and I didn’t know her that well. She was beautiful and inquisitive and earnest with her answers during class discussion.  Her papers were well written.  Her last paper, a critique on Linda Kerber’s Women of the Republic, a book about women during and directly after the Revolutionary War, talked about how women took incremental steps to be increasingly active in the public sphere, to be accepted in political life, to be able to enter into legal contracts.  They slowly strove to be perceived as equals.

They still are.

According to the National Coalition against Domestic Violence, 1 in 7 men have been victims of severe domestic violence in their lifetime, while the number of women who have experienced severe domestic violence is 1 in 4.  Twenty five percent of women have experienced severe physical domestic violence in their life time.  That’s hardly equal.

Additionally, 72% of all murder-suicides involve an intimate partner; 94% of the victims of these murder suicides are female.

It’s too many, it blows the mind.

I’m reminded that it can happen to anyone, that the Rob Porter scandal proves this.  He was violent not with one women, but with both of his ex-wives, and the White House has known about it and has kept him on as a staff member until pictures were released where one of his ex-wives had a black eye from his fist.  I’m reminded of the Ray Rice episode where the NFL knew he had been charged with domestic assault but didn’t do much about it until the video was released to the public showing him knocking his wife out cold in an elevator and then dragging her body into the hotel lobby.  These men were protected by silence, and their wives were punished by the Exact. Same. Silence.

As a historian, I started recording oral  histories of women who attended the 2017 Women’s March on Washington, interviewing women from across the country.  Many women said the reason they attended was because they had been sexually or physically assaulted, and having a man who bragged about sexual assault and then called it “locker room talk,” hit them at a visceral level.  And I can’t help but determine that the #MeToo movement has everything to do with the Women’s March, it was the genesis.  But it also goes to show that even from my student’s words, even from the Revolutionary War, women strive to be seen and to be protected equally under the law.

Women are now exhausted and angry.  I am exhausted and angry.

My daughters saw me upset as I picked them up from school and I had to tell them why.  A student of mine had been murdered.  I had to go to class the next day and talk to my students in that class, some of whom shared their own encounters with domestic violence. I shared the news story on facebook, and along with multiple messages of support, I got more messages from friends who had survived domestic abuse and I never knew it.

And yesterday morning I talked to my fourteen year daughter old about domestic violence. I told her it’s never ok for a boy to touch  you in ways that you don’t want to be touched, in a sexual way or in a physical way.  It’s never ok for a man to hit you.  Never .  Never.  That her father and I will always support her, no matter what, no  matter how old she is, that she can always come home.  That this is important, remember it.  And I hope she will.  And I’ll tell her younger sister when she gets a little older.  And I’ll tell them again as time goes on.  It’s never OK.

I debated whether or not to write this blog post, and put it on this site, a site for caring for chronically ill kids.  But it’s important.  We need to talk about it.  We owe it to the women who have suffered domestic violence.  To those who lost their lives.  To those who currently live in fear.

Our silence protects the abuser and punishes the abused.  We cannot stay silent.